Should be able to just stop valcyte. Its scary to think you have to come off after a med like this has given you improvement. But there have been a few of us who if/when viral symptoms returned were able to get improvements again when we went back on valcyte and it seems to improve us quicker the second time around, maybe the initial long course of valcyte has got the viral load down alot, so if we jump on a viral reactivation early then we can get on top of it quicker. I guess we have to remember that many of us have probably had the viruses constantly reactivating in us for years which was why our viral loads were initially so high.
The end of last year i stop both famvir and valcyte as it was negatively impacting my neutrophil count which was affecting my sinusitis. SInce stopping, my neutrophils have come up some although still low but better then they were. For me i only lasted a month of before viral symptoms returned(dam immune system). WHere i then went back on valcyte for 2 weeks, this was after talking to my doc and taking my low neutrophil count into consideration. Within 3 days of valcyte i felt alot of improvement. I have done 2 of these 2 weeks courses of valcyte so far which have helped. I also did one course of famvir only not expecting it to help but it did, maybe(??) coming off famvir for awhile was a good thing, maybe there is some type of tolerance to famvir?? ANyway my doc said the antivirals like famvir were meant to be used in a cyclic fashion, this was after i brought up possible av resistance, i dont fully understand this but he said its totally different to antibiotic resistance. SO since off av's regularly, im starting to lasting longer off av's and my sinusitis is easier to treat since my neutrophils have come up.
I think an important thing is to improve immune function when off av's, for some it bounces back once viruses are down, for some of us this doesnt happen as easy. I tried a few things like ahcc and inosine which didnt seem to help. SO i have stuck with what has worked for me in the past which is cycloferon and immunovir which i alternate between every month or so. I havent been tested recently but both in the past those substances either improved nk function or increased nk numbers.
I think for many of us we have improved but still have some symptoms, so not 100%. At this stage im also persuing the hpa axis issues(adrenal fatigue), so trying to improve hormone function etc I think even though we have treated the infections we maybe in a post viral state which takes time to come out of as well and maybe some things are permanently damaged by ME and these infections which leaves us with some symptoms. For me i still have sleep issues but its alot more managable then it was in the peak of my badness. EG some still have some issues with pots/oi .
I think we still have to be careful with activity but our boundaries are alot bigger then they once were. Many symptoms have greatly reduced, for me less headaches, brain fog, cognitive issues decreased, better stamina at work. Am i 100%, no, but im glad i have used antivirals as it has improved my quality of life.
Sorry for the long dribble, hope u get some reassurance out of it.
cheers!!
